He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.- Isaiah 40:29-31

Thursday, May 28, 2009

For anyone that knows me, you know I like things orderly and neat. Sometimes too neat and God must have known that as he gave me three boys and Jeff. I'm the one who got up every morning in college and made her bed. It irritated my roommates so much that some days they would go into my room and unmake the bed just to get me stirred up. But, over the years I've gotten better about letting things go a little. Yes, I still organize a ton and try to keep things neat but time has gotten slim and the boys are just too much to keep after so things slide. It seems like it's slid a little too much lately though. We're back in the hospital today after another nighttime fever run to the ER. Joshua's counts are beyond low and therefore my plans to get the house in order get pushed further away while the boys plans to destroy it are front and center. I'm hoping that we get out of the hospital by Saturday and I can tackle the clutter all afternoon. It's driving me crazy ;-)

And to add to the chaos that is our lives, we have exciting news. Our family has a new addition. Lulu our 11 week old shih tzu puppy joined us on Sunday. She is such a little sweetie. I would love to add pics right now but I'm on the hospital computer and don't have any with me. I'll post some as soon as I get home because once you see her little face, you're sure to fall in love. The boys are great with her and we are very happy with her. It's been about a year and a half since our last dog disaster and we felt like the boys were finally ready. So far, we've been right. I'll keep you all updated on our little Lulu!

Thursday, May 14, 2009

Before I write the real post for today, I wanted to let everyone know that the National Institute of Health will be at the golf tournament for Joshua on May 31st swabbing for the bone marrow registry. Even if you aren't planning on coming out to golf, please stop by and get on the registry. It's a simple mouth swab and then you are put on the list. ONLY if you are a match for someone out there will you be contacted for further testing. Please be aware that if our little guy were to ever relapse again, we would go to this registry looking for a match as Noah isn't a match and Adam can't be one (see the last paragraph and link for reasons). There are so many children and adults out there looking for a match. YOU could save a life!!!!! Now...

I always refer to our family as "those" people. You know. The ones who's kids are running through the restaurant and causing a scene. Or the "freaks of nature" that we are with the hospital. But today, I have dealt with the other kind of those people.

Today, as I am driving through a parking lot because the store I needed to go into wasn't open yet, I get a beep from behind me. Now mind you, the signs all say 15 mph. I'm going about 15 mph. This woman in her 60's is riding my bumper. She pulls off and parks. I've had it. I've had it with people walking all over me and my family so I stop in the middle of the street. I put down my window and wait for the woman to get out of her car.

Me: "Did I do something to offend you."

Rude Woman: Ignores my question.

Me: Still sitting there and staring at her.

RW: "Well I'm in quite a bit of a hurry and you were driving rather slow."

Yeah, that's what happens when you piss off a women who has dealt with screaming children all morning.

So I'm enjoying my win with the rude lady when I get home and need to call Acer about my computer. Jeff bought we one of those little netbooks for my birthday back in January. The microphone has never worked and now the speakers aren't working well either. I called them two weeks ago after finally getting around to doing it and after all the "uninstall this, do that" they tell me to call back after I clean it off and reprogram it. When that didn't work, I called today only to have them tell me that I didn't call two weeks ago and to do the same thing they told me two weeks ago and call back. That's it.

ME: "You mean to tell me that I need to do exactly what I've already done and then call you back so that you can tell me I never called in the first place and we'll repeat this cycle."

Guy I can't Understand because he barely speaks English: "yes"

ME: I need to speak to your manager."

GICUBHBSE: "He's on another call right now."

Me: "Well I'll wait. I bought this computer over another brand and you won't even fix it. Your company is not high on my list and your company's customer service sucks."

GICUBHBSE: "Hold on."

After waiting on hold for like 3 minutes he comes back to give me service request number, to apologize for what just happened and gives me an address where I can mail my computer. Then I ask him why I have to pay to ship it to them because it's a hardware problem that it still under warranty. Of course I don't get an answer but I'm not finished with Acer yet.

And finally, we really are those people. As I've mentioned before on here, Joshua and Adam's leukemia story is quite unique. The doctors have learned a great deal from our boys blood. So much so, that they recently wrote an abstract that was published in the journal Blood. IF you read it, please know that I only understand it because I live it and even then, it's very technical! Yep, we're THOSE people!

Wednesday, May 13, 2009

It's been busy for us lately. Joshua has had numerous doctors appointments and with Noah finishing up Pre-K as well as participating in t-ball, there isn't a lot of time left for updating the blog.

First, Joshua had his GFR test last week and thank God the results came back normal. We'll still keep a close eye on his kidney function but at least now we have numbers to back up the fact that they are clearing everything the way they should be. He was supposed to be admitted for more chemo on Tuesday but his platelets were only at 16 so that delays us a week. We'll go back on Friday to see if he's moving in the right direction and then we'll plan for a Monday admission. He's still getting over this bug he's got. Seems that the paraflu that left for about a week has gotten him down again. We've being doing neb treatments and hopefully he'll be able to kick this soon.

And for the biggest news in the Czorapinski household. Joshua is a potty man!!! When we got home last Wednesday, I put him on the potty and we haven't looked back. I guess he just decided to join in. We know you can't make the kid do anything he doesn't want to. When I told him a few weeks ago that you can't go to Disney World unless you go in the potty, he answered "oh well. I guess you'll just have to go without me." Gotta love that kid.

Hope everyone is enjoying the weather. We sure are! I'll be sure to update soon as Noah has his Pre-K graduation next week and I'm sure to have a ton of pictures to post.

Tuesday, May 5, 2009

Joshua is finally ready to come home today. His ANC is in the 800's and he's been fever free for over 24 hours. So far, his blood cultures haven't grown anything. This is great. Oh, there's just one small problem. It's Tuesday. Joshua's due his next two chemo doses today. And guess what. Those numbers are good enough for chemo. Great. So before he can come home today, they'll pump him full of two more toxins and then send him on his way. Only for those toxins to tank his counts once again and most likely send us back to the hospital by the weekend. I HATE CANCER!!!!

And just to keep us busy since we have so much free time away from Hopkins, we'll be driving back up tomorrow for his GFR (kidney function) test. Fun times. Summer certainly can't get here quick enough.

Speaking of summer, we got our confirmation yesterday from the Believe in Tomorrow Foundation. We'll be staying in Ocean City from August 16th to the 23rd. We will have a two bedroom, one bath condo that is a short walk to the beach. Thanks to this wonderful organization, we'll be able to have a summer vacation. Then, we will only have about 2 months before we get to go to Disney with Make-A-Wish. Can I just tell you how excited we are for these trips. It's a chance for our family to escape the hold that cancer has on our lives. Of course we can never truly escape as Jeff and I are on pins and needles the entire time and every thought is about germs, fevers, illness and cancer, but we really need a break and these trips just can't come soon enough.

Sunday, May 3, 2009

It's been quite a weekend. Joshua was finally discharged on Friday morning. We were told that even though his creatinine levels had come back down, because of how much chemo this kid has had, we are going to go through with a GFR test. Basically, they will inject dye into Joshua's port and then do blood draws over a certain period. This test will give us an answer as to how well his kidneys are functioning. After 3 years of chemo there is a good chance that they have been affected in some way.

So, we get home on Friday only to have Joshua's temperature start to rise by Friday evening. He didn't get to the fever point but he was hovering around 99. For Joshua, that is high because he's usually well below 98.6. Jeff and I watched him like a hawk all night. That watching continued as did the temp until I finally called up to Hopkins on Saturday evening. The doctors felt that since he was still active and playing and he didn't have that 101.4 temp, that we could stay home and see what happened. Did I happen to mention that while we were in on Thursday, Joshua started with a cough once again. This cough has progressed by this point and he is now hoarse as well. So, for the second night in a row, we watched the little man closely. He got really sweaty around 10 pm and stayed cool all night. I thought that his body had finally kicked that temp and we were in the clear. WRONG. First thing this morning, Joshua's temp went to 101.8 and we were on our way to our home away from home. I swear I sleep more on the pull out couch at Hopkins than I do in my own bed.

Well, once Jeff got Joshua to the Hopkins ER, they did yet another chest x-ray and started antibiotics. His blood pressure dipped a little and they added yet a second antibiotic. I will note that his creatitine levels were back to normal today so that is promising on that part. His ANC was 1700 when we were admitted on Tuesday. The chemo he got shouldn't have dropped it much and not by this point anyway, but today his ANC was 240.

So here we are. We're in again with no idea of when we'll get out. I swear I'm sending my next mortgage payment to Johns Hopkins rather than the bank!

Our Boys

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About Us

Jeff and I were married on Novemeber 2, 2002. God gave us our son Noah on October 24, 2003. Then, he decided to give us two more miracles when I delivered identical twins, Adam and Joshua on June 20, 2005.

We thought life was complete chaos but we were surviving. Then, on April 17, 2006 at almost 10 months old, Joshua was diagnosed with Acute Lymphoblastic Leukemia. He went through a very harsh 2 year treatment protocol and finished treatment on March 28, 2008. We were so ready to finally start to live life and be a normal family. Then, our second worst nightmare came true.

Joshua had an isolated testicular relaspe in May 2008. He started another 2 years of chemotherapy as well as testical radiation on May 20, 2008. We have had a rough life, but we are living! Joshua received his last dose of chemo on August 17, 2010.